I have had vitiligo since age 5, when I started losing pigment on my knees. As a little girl who was constantly outdoors and playing in the sun, I was very tan and it really showed. When the white patches began to spread to other areas I started to cover it up. Summer and vacations were the worst, and I saw other kids running around in shorts and bathing suits without a care in the world. I was asked if I had been burned in a fire very often and kids were curious, and often mean. I felt ugly and different and it caused so much pain for me and also my family, who came to my defense from the teasing and the questions.
The worst effects occurred through middle school, when I was developing into a teenager and concerned with my appearance more than ever. I went to a bunch of doctors and ended up taking a pill and standing in a light box a few times a week to try and restore the pigment, and was told to wear these awful huge sunglasses and stay out of the sun. It didn’t work and I grew tired of the process. I experimented with tanning products and eventually just stayed out of the sun, covered it up as best as I could, and eventually just accepted it. But the damage was done. Depression, self hate, punishing self talk, dissociation, hopelessness. If I had known other kids who had it, instead of internalizing it as just my ugly body, things might have been very different.
These days, I’m mostly on the fair side and it’s not as noticeable, people have to look twice, when I show them. It is part of me, but not all of me. I see that now. But there are kids who are out there dealing with the feeling that they are ugly, and they have no control over their body and also that they are alone.
So I am asking for some help. I am looking for kids and adults with vitiligo who would be willing to share their stories and photos with me and be featured in a photography book. I am looking for photographers to capture the beauty of each individual and the essence of our unique community. I am looking for help organizing local events to bring people together.
Thanks for checking out my site today, and please contact me if you would like to help or have any comments.